I'm autistic. So is my 21 year old daughter. So is my 41 year old brother.
My brother was diagnosed in a different era, back when the word autism conferred much blame on the parents. They moved to another state, they hid his diagnosis under other labels. Being unaware of labels and stigma, I taught him things. His first sign, at age 5. How to swim, how to do jigsaw puzzles, how to read. I saw a brother who could do many things, if one were patient and took their time. One time, when he was 7, the doctors ranked him low on a nonverbal IQ test because he would not stack blocks. He didn't like blocks. What he liked to stack were red Solo cups. That he was quite capable of stacking didn't matter to them, because he didn't do it their way. That day, my brother taught me something about people and their perceptions, and it's a lesson that's stuck with me.
My daughter is a talented artist, and she has mastered a number of mediums - she paints, sews, sculpts, knits, weaves, makes jewelry. When she was little, she would pull clothes of Barbies and adapt them for her beloved Beanie Babies. As she got older, she announced that she wanted to be a costume designer. A principal when she was a high school freshman told her that she should focus on becoming a ticket taker at a movie theater as her vocational goal. She signed up for Voc Rehab and they told her she needed to be "practical". She is in college, studying fashion design, and a few months ago, she participated in a local fashion show where she walked the runway wearing her own designs. She and her friends are constantly creating all kinds of stuff. She will have a great future.
I'm so sick of Autism Speaks' negativity. I'm tired of their patronizing attitude that they "know best" for us. I'm weary of them presuming that they know anything about my life or the lives of the many autistic people I know. I've raised two generation of autistics and while it's not easy, it's not the way Autism Speaks presents it. They are dehumanizing our children and portraying parents as their helpless victims. We are not victims of our children, rather the truth is that we, our children and adults with autism are victims of an brutal system of care that has little understanding of autism. Autism Speaks is a parasite that feeds off that injustice, fans the flames of prejudice and then doesn't use the money they raise to help individuals and families in need. They take money away from the few organizations that are out there, actually doing the work.
" He didn't like blocks. What he liked to stack were red Solo cups. That he was quite capable of stacking didn't matter to them, because he didn't do it their way. "
ReplyDeleteYou just described one of my biggest irritations with the evaluations for my daughter. " She doesn't like blocks" I tell them, " she'll stack the canned goods and the play doh tubs taller than she can reach." But they aren't willing to let her show them. She does so much, even way beyond typical toddlers, but she does it her own way, and in her own time. But she is the oneaccused of lacking empathy?
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